A Collaborative Approach for the Development of a Standardized Set of Patient-Centered Outcomes in Head and Neck Cancers


  • Ana Joaquim Centro Hospitalar de Vila Nova de Gaia/Espinho. Vila Nova de Gaia. *Co-first author.
  • Ana Rita Nobre Instituto Português de Oncologia de Coimbra Francisco Gentil. Lisboa. *Co-first author.
  • Cláudia Araújo Instituto Português de Oncologia do Porto Francisco Gentil. Porto. *Co-first author.
  • Guy Vieira Joaquim Chaves Saúde – Clínica de Radioncologia do Algarve. Faro. *Co-first author.
  • Paula Alves Instituto Português de Oncologia do Porto Francisco Gentil. Porto. *Co-first author.
  • Paulo Carinha Centro Hospitalar Universitário de São João. Porto. *Co-first author.
  • Leonor Ribeiro Centro Hospitalar Universitário Lisboa Norte. Lisboa. *Co-first author.




Head and Neck Neoplasms, Patient-Centered Care, Patient Outcome Assessment, Quality Indicators, Health Care


Introduction: Head and neck cancers remain a significant health burden worldwide. Standardizing the care provided to these patients through the systematic measurement of established indicators is key to improve their outcomes. The aim of this study was to establish a relevant set of outcome indicators in this condition and identify measurement tools and requirements to do so.
Material and Methods: One scientific committee and two regional working groups worked in a stepwise manner to narrow down an initial list of potential outcome indicators retrieved from an exhaustive literature review to a smaller set of outcome indicators according to their clinical practice. This was assessed by one representative of a head and neck cancer patient association until a final set of indicators was reached.
Results: A total of 164 outcome indicators comprising case-mix, outcomes, and adverse events dimensions were retrieved from the literature. These were reduced to a working set of 79 outcome indicators by the Scientific Committee and divided into seven categories including demographics, clinical status, tumor-related parameters, nutritional status, treatment, health and quality of life parameters and survival. Subsequently, these indicators were further reduced to a set of 50 indicators by the regional working groups and to a set of 49 indicators by the final Scientific Committee assessment. Finally, the discussed indicators were appraised by a head and neck cancer patient association, which added the ‘rehabilitation’ category, a key parameter to these patients.
Conclusion: An initial set of outcome indicators for head and neck cancer was systematically developed aiming to standardize the care provided to these patients across institutions at national level and identify measurement tools and requirements to measure those indicators. This standard set should be continuously improved and consistently adopted in the different clinical and national settings.


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Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin. 2018;68:394-424.

El-Naggar AK, Chan JK, Grandis JR, Takata T, Slootweg P. WHO Classification of Head and Neck Tumours. In: WHO Classification of Tumours, 4th ed. Lyon: IARC Press; 2017.

The Cancer Genome Atlas Network. Comprehensive genomic characterization of head and neck squamous cell carcinomas. Nature. 2015;517:576-82.

Leemans CR, Snijders PJ, Brakenhoff RH. The molecular landscape of head and neck cancer. Nat Rev Cancer. 2018;18:269-82.

Taberna M, Mena M, Pavón MA, Alemany L, Gillison ML, Mesía R. Human papillomavirus-related oropharyngeal cancer. Ann Oncol. 2017;28:2386-98.

Miranda-Galvis M, Loveless R, Kowalski LP, Teng Y. Impacts of environmental factors on head and neck cancer pathogenesis and progression. Cells. 2021;10:389.

Pfister DG, Spencer S, Adelstein D, Adkins D, Anzai Y, Brizel DM, et al. Head and neck cancers, version 3.2020, NCCN Clinical Practice Guidelines in Oncology. J Natl Compr Cancer Netw. 2020;18:873-98.

Seiwert TY, Burtness B, Mehra R, Weiss J, Berger R, Eder JP, et al. Safety and clinical activity of pembrolizumab for treatment of recurrent or metastatic squamous cell carcinoma of the head and neck (KEYNOTE-012): an open-label, multicentre, phase 1b trial. Lancet Oncol. 2016;17:956-65.

Cohen EE, Soulières D, Le Tourneau C, Dinis J, Licitra L, Ahn MJ, et al. Pembrolizumab versus methotrexate, docetaxel, or cetuximab for recurrent or metastatic head-and-neck squamous cell carcinoma (KEYNOTE-040): a randomised, open-label, phase 3 study. Lancet. 2019;393:156-67.

Ferris RL, Blumenschein G, Fayette J, Guigay J, Colevas AD, Licitra L, et al. Nivolumab for recurrent squamous-cell carcinoma of the head and neck. N Engl J Med. 2016;375:1856-67.

Burtness B, Harrington KJ, Greil R, Soulières D, Tahara M, Castro Jr G, et al. Pembrolizumab alone or with chemotherapy versus cetuximab with chemotherapy for recurrent or metastatic squamous cell carcinoma of the head and neck (KEYNOTE-048): a randomised, open-label, phase 3 study. Lancet. 2019;394:1915-28.

Gatta G, Capocaccia R, Botta L, Mallone S, De Angelis R, Ardanaz E, et al. Burden and centralised treatment in Europe of rare tumours: results of RARECAREnet—a population-based study. Lancet Oncol. 2017;18:1022-39.

Braakhuis BJ, Brakenhoff RH, René Leemans C. Treatment choice for locally advanced head and neck cancers on the basis of risk factors: biological risk factors. Ann Oncol. 2012;23:x173-7.

Chow LQ. Head and neck cancer. N Engl J Med. 2020;382:60-72.

U.S. Department of Health and Human Services. Better, smarter, healthier: In historic announcement, HHS sets clear goals and timeline for shifting Medicare reimbursements from volume to value. 2015. [cited 2021 Mar 04]. Available from: https://www.hhs.gov/about/news/2015/01/26/better-smarterhealthier-in-historic-announcement-hhs-sets-clear-goals-and-timeline-for-shifting-medicare-reimbursements-from-volume-to-value.html.

Porter MT. Redefining health care: creating value-based competition on results. Cambridge: Harvard Bus Press; 2006.

Lee VS, Kawamoto K, Hess R, Park C, Young J, Hunter C, et al. Implementation of a value-driven outcomes program to identify high variability in clinical costs and outcomes and association with reduced cost and improved quality. JAMA. 2016;316:1061.

Porter ME. What is value in health care? N Engl J Med. 2010;363:2477-81.

Porter ME, Larsson S, Lee TH. Standardizing patient outcomes measurement. N Engl J Med. 2016;374:504-6.

Cramer-van der Welle CM, van Loenhout L, van den Borne BE, Schramel FM, Dijksman LM. ‘Care for Outcomes’: systematic development of a set of outcome indicators to improve patient-relevant outcomes for patients with lung cancer. BMJ Open. 2021;11:e043229.

Ong WL, Schouwenburg MG, van Bommel AC, Stowell C, Allison KH, Benn KE, et al. A standard set of value-based patient-centered outcomes for breast cancer. JAMA Oncol. 2017;3:677.

Zerillo JA, Schouwenburg MG, van Bommel AC, Stowell C, Lippa J, Bauer D, et al. An international collaborative standardizing a comprehensive patientcentered outcomes measurement set for colorectal cancer. JAMA Oncol. 2017;3:686.

Martin NE, Massey L, Stowell C, Bangma C, Briganti A, Bill-Axelson A, et al. Defining a standard set of patient-centered outcomes for men with localized prostate cancer. Eur Urol. 2015;67:460-7.

Morgans AK, van Bommel AC, Stowell C, Abrahm JL, Basch E, Bekelman JE, et al. Development of a standardized set of patient-centered outcomes for advanced prostate cancer: an international effort for a unified approach. Eur Urol. 2015;68:891-8.

International Consortium for Health Outcomes Measurement (ICHOM). Patient-centered outcome measures. [cited 2021 Mar 05]. Available from: https://www.ichom.org/standard-sets/.

Berenson RA, Kaye DR. Grading a physician’s value - the misapplication of performance measurement. N Engl J Med. 2013;369:2079-81.



How to Cite

Joaquim A, Nobre AR, Araújo C, Vieira G, Alves P, Carinha P, Ribeiro L. A Collaborative Approach for the Development of a Standardized Set of Patient-Centered Outcomes in Head and Neck Cancers. Acta Med Port [Internet]. 2023 Jan. 5 [cited 2023 Mar. 30];. Available from: https://actamedicaportuguesa.com/revista/index.php/amp/article/view/18180